Five months with a new knee

3 July 2016: 5 months post surgery

I am sitting out on the Yorkshire Moors reflecting on my knee replacement journey over the last five months. 

It feels great to have had the opportunity to come to the UK to speak at a conference and to have a few days holiday afterwards to relax.

My conference topic at  http://evidencelive.org was about getting the heart into evidence - and I talked about how difficult I had found it (as an informed and somewhat bolshy health consumer) to get reliable evidence-based information about  management of my arthritic knees. See graphic summary below.

It was about a year ago that I went to see the first surgeon who told me to go away - and come back in 10 years. I am so thankful I sought other opinions and I am really pleased with my new knee. My levels of pain and discomfort have reduced so much. My whole outlook has really changed and improved. However I wanted to make it clear to the people at the conference that different people in the same situation may have made different choices. But that's the Point - people need to have access to good accurate information about risks and benefits of options - and then decide on what option will be best for them.  It was interesting that after my presentation about 6 people came up to me and talked to me about their knee or hip issues. It was also nice to hear people "tweeting" about the value of hearing a consumer perspective at the conference.

On this trip I have stepped up my walking to around 6-8kms a day. But I get quite tired doing those distances. I am still using walking poles as my left knee is getting weaker and I now find I am starting to limp/ lumber  again.

I am not able to keep up with Peter - but he is an epic walker...so we have worked out ways to do things we both enjoy together and then I drop him off so he can wander. 

It has become very apparent to me that I am going to need to have the left knee replaced sooner rather than later. I had hoped that it would last a few more years but it is getting more and more swollen and sore. I have no desire to rush into surgery again this year - but I don't think I am going to get the full range of benefits of my new right knee if the left knee keeps hobbling along. This situation was made really apparent while we stayed in a small two storey cottage. The cottage had very narrow stairs with the toilet on the top floor. It took a tremendous effort for me to clamber/crawl up the stairs on my hands. Not something you want to be doing at 2am with a full bladder!

To summarise - since the last blog a month ago - there has only been gradual/ incremental change. I have increased my walking an additional 1-2kms a day. I am still taking NSAIDs and I have also gone back to taking panadol as well in the last few weeks. My left knee is swelling more as a result of this activity - but overall I feel GOOD - positive, healthy and enjoying life.

I really hope that this Blog provides some insight and information for others with arthritic knees - and informs others who may have friends and family with arthritic conditions.

4 month progress report

29 May 2016 - 4 months post surgery

It is great to reflect on how much my knee has progressed in 16 weeks.

While I still use the walking poles when I walk with the dog, I can now go up and down slopes, and can walk much further than pre-surgery. It is wonderful now having a lovely straight right leg and I don't now need to sit on a cushion while driving and I can cycle much more effectively.

I am now more flexible and can get up and down off chairs and sofas. I  previously had cushions positioned all over the house to help me get up off chairs - but I don't need them now.

The scar is all nicely healed. There is still a lot of bruising but the swelling has significantly reduced.

I am feeling a lot more energetic - out gardening, house cleaning and walking Lewis. I am beginning to reduce the dose of anti-inflammatories. I still need them as the left knee is pretty sore and complaining a lot. 

I now regularly forget about my new knee - in fact when I beeped going through the airport security system last week my first thought was my belt buckle setting off the alarm. The security guy asked me to step aside and then asked if I had a metal knee. Oh yes - I then remembered - I am bionic - and my new knee is fantastic!! 

3 months on...

29 April 2016: 3 months post op

It is Autumn now and three months ago I had a total replacement of my right knee. 

As I was walking into the swimming pool this morning I was greeted by a nice older man in his 80s who I chat to when we are in the gym on our exercycles. He is waiting for a knee replacement but can't get on the public waiting list for the operation and he doesn't have health insurance. He called out to me cheerily and said how well I was walking and what a difference he could see in me since the surgery. He said "your whole face looks 10 years younger without the pain you had before". 

It was a great way to start the day and a good start to reflecting on progress to date. Three months on:

- I am walking around the house without any crutches. I still use walking poles when I go out for dog walks with Lewis. I can easily walk 3-5km a day. 6km is still a bit too far.

- I am moving well except when tired I tend to limp - but the walking poles help keep me on an even keel

- the post op swelling and bruising has reduced significantly and the scar has healed well but is still creepily warm to touch

- the pain is much reduced. I get a deep kind of bone pain in my right thigh when I have overdone things. I still find it hard to stand still and chat to people - I need to keep moving rather than stand in one place 

-  my new knee hair regrowth is rampant

-  my walking and cycling in the gym is getting speedier and my I am able to do more complex and vigorous aquajogging. I can easily cycle 7km but 9 km is at present, too far  

- my cooking is improving - I have even managed to cook a couple of meals for friends. I tried less ambitious dishes that I could pre-prepare and that worked out well

- I can sleep through the night without pain

- I can get up off the toilet without having to lever myself up using the walls. (This is great progress!)

- some days I feel like I could dance!

I had a visit with my surgeon on Tuesday this week. He was also really positive about my progress. I had been feeling a bit disheartened that I am not fully able to enjoy the benefits of the new bionic knee because of the arthritis in my left knee gets sore when I get too active. He said he was expecting me to say that - given that my left knee is also very arthritic. He said that my new right knee would take another 6-12 months to get into peak condition. I should expect to still feel the bone pain and also the heat from the scar for quite a few more months. But that over time the new knee would become the dominant knee and reduce the strain on the left knee... So here's hoping!

I also really hope that my 80 year old gym buddy also gets a chance to have his knees replaced and that he has the chance to sleep through the night and to enjoy life again.

Weeks ten to eleven

15 April 2016: Eleven weeks post op.

I have returned from my brief visit to England.  Spring was in full force in London with daffodils popping up everywhere.

The meetings in England were fantastic. I feel like I am back into my work "groove". I met up with people I hadn't seen for a few years and met some really great new people. I am now on the international Board of Cochrane.org and it is great to spend time with people who are deeply committed to evidence- based healthcare and volunteer their time to demonstrate which health care services work.

http://www.cochrane.org/what-is-cochrane-evidence

The plane travel to England worked well.

I paid for an upgrade so was able to stretch out on the plane and to have  some comfort. Emirates is an ok airline - not super duper - but they have some good bargains. Their flights from Auckland to Dubai are incredibly long - 16-17 hours in the air, so it would have been torture to have had my leg compressed in economy class for such a long time.

Emirates were very considerate with their mobility assistance arrangements and I was so pleased to have wheelchair assistance in the airports. The other cool thing they offered was a free driver service to your hotel and to the airport so that meant I didn't have to lug my bags onto public transport. 

The down-side is that the trip was really physically demanding. My new right knee works well - but got tired especially during long days of meetings. My left knee has also suffered and is now very sore. 

When I left NZ I was walking pretty much unaided.  I took a crutch with me as a back up plan to give me support when I was standing. However, as I picked up the pace in Oxford and London and started walking longer distances (going to restaurants with colleagues and very slow moderate sightseeing), my left leg just got sorer and sorer and I became completely dependent on the crutch limping.  

I have been using an app on my phone for tracking my walking distances. I find it quite informative.

I was really mindful of not "overdoing" things on the trip and so I organised myself so that on my non work days I made small forays out and went back to my room for a rest or to sit quietly in a cafe.  I didn't do many of the usual things I would do on a trip (like go shopping for hours, go to museums and galleries etc). My stamina has really gone downhill. On a couple of occasions when I was out looking in shops, I got so sore and overwhelmed I just plonked myself down on stairs in order to sit for a rest. I fear I may have had a somewhat grey ashen appearance as shop attendants usually hovered around offering me glasses of water.

The appearance of my crutch and hobbling did have some other surprising impacts I hadn't foreseen. People I was meeting for the very first time perceived me as "disabled". Strangely, I hadn't anticipated this. In my mind, I have a temporary health situation that is going to resolve. Ok, so I have been masking the impact of arthritis in my life for the last few years - and I know that I still have arthritis in my left leg that is going to have to be addressed with surgery - but it didn't occur to me that I was dis-abled.  In most situations, people were very welcoming. I had a great meeting with the Cochrane Consumer Network people who were awesome. They have lived experience of significant health issues and they each contribute to developing reliable evidence that can inform health choices. I met a wonderful woman on the group, Anne, who also has arthritis and over the days we had together we had some fantastic talks about how arthritis affects your life. (For example, I hadn't realised how common it is for people with arthritis to have dreams about wanting to break their bones to stop the pain of having the bone pain and rigor. I had been having that dream for about a year before my surgery). 

People were also very considerate in meetings and went out of their way to help me put my leg up (we had boxes and chairs pulled into service) and they were very kind.  On the streets I found people very thoughtful - opening doors for me and being helpful. Most new people meeting me didn't mention the crutch and assumed it was a permanent feature of my life.

Since getting home I have been back exercising in the pool (which feels great). On Tuesday I started chatting with an older lady who must have been in her 70s and she had a knee replacement one week after me. We compared war stories and scars. She finds the water exercises very exhausting and is still finding walking hard. She is however delighted to be painfree.

For regular readers of this blog, here is the latest photo of my scar.

The haematomas are still quite prominent although the one above my knee is starting to soften. The lady in the pool didn't have any haematomas but does now have super hairy legs.

So - it is nice to be home. I am hoping that the sore left leg will resolve and keep pace with my lovely new right knee. I am feeling energised by my travels and the people I met. And in retrospect - I think I am still making progress and one day soon I will be able to disengage my crutch and walk unaided.

Nine weeks on - reporting in from England

3 April 2016 - 9 weeks post surgery plus a couple of days

I had expected to build-up to travel slowly. I expected that the first time I would be testing out my new knee would be travelling to a conference in England in June. So the current invitation to travel to England to attend Cochrane meetings took me by surprise.  

I can now report on how well my planning for this tour has worked:

- the graduated compression stockings were useful on the flights. My legs didn't swell and they were "good to go" when I arrived

- the wheelchair and mobility services provided in airports were well organised and reliable. It was initially a bit embarrassed to be in a wheelchair when I had spent the last two months trying to walk independently - but by being ushered through bustling airports was a massive relief. I would highly recommend this service

- I brought a crutch with me rather than a more subtle walking stick. I have been relieved to have the crutch to lean on - literally and figuratively. It has been great to use while standing up and talking to people at conferences. It has reduced my limping when I am tired. Plus it has been a useful signal to people that I need a little more space, I walk a little bit slower and that I need to take a bit of care with my mobility. People have been very kind and courteous - opening doors, finding chairs for me and being thoughtful about giving me directions with easier access.

I have tried to manage my free time carefully - taking taxis and hop-on hop-off buses so that I can get out and about and see new things but I don't waste my walking energy by getting lost and meandering around.

Yesterday after running some errands, I ran out of steam and went in search of a cab.  I was pleased to be invited into the Morse bar at one of the flashiest hotel in Oxford while the concierge hailed a cab for me.

During this trip it has been nice to meet  up again with old friends and colleagues - I had been a bit shy about telling people about the arthritis issues I was managing so now I feel no pressure to pretend I was not in pain.

I have also "knocked off" one of my big fears. I have just given a 20 minute conference presentation. I didn't use my crutch and was able to stand up and move around easily while talking. Whew!

I have significantly increased my walking. I have been now walking between 4-6km a day. In addition I have been standing around chatting (which takes a lot of energy). I was talking to Peter about this and how tired I am feeling and he pointed out that it is probably at least a year since I was able to walk 6 km - so it isn't surprising I feel tired.

I am finding ascending stairs quite hard. Last night we went to a dinner at Balliol college in their great hall. It is a huge and impressive building with a steep flight of steps. What I hadn't realised was that a trip to the bathroom involved going down and up the stairs (in the rain and darkness). And it is pretty near impossible to move quickly with crutches.

I am off to London this afternoon. It will be interesting to see how I will go in a larger city with vast differences and also larger numbers of people on the street.

My scar is coming along well although the hair is growing back quite thick and lush.

So - even though I am feeling tired, I am feeling good about getting around and managing travel. And I am pretty pleased that my capacity for distances is surely but slowly - increasing.

Eight weeks at Easter

T26 March 2016: 8 weeks post op

I have felt really great these last few days. This week I have had a few long walks and have been busy with work and planning my trip to England next week.

On Wednesday we went for a beach walk. It seems like more than a year since  I walked on the beach and it was great to    be on the sand and to breathe wonderful sea air. I took my walking poles and was able to go for about 2 km.

Lewis also had a great time bouncing around and chasing sticks.

Today we had a fun walk with Lewis's mother and brother. This was the first time we had walked with them and it was quite boisterous and full-on.

It was the first time I have been for a walk  with people who didn't know I have had a knee replacement. Although I had my walking poles I didn't feel as if I walked too slowly or was noticeably disabled. Peter has also observed in the last few days that I am no longer limping and I haven't been using my crutches much. I have been back into my working routines and not resting or sitting down during the day.

It has taken quite a lot of background organising to get things sorted for my trip next week. I had to get a doctor's certificate to say I was fit for travel. This information was required by the travel Insurer and also by Jetstar. I also had to be "medically assessed" by the travel insurer for my "pre-existing condition" - ie my new knee. I was asked a series of formulaic questions and then told that for an extra $75 the insurer would cover me for any issues related to the knee. What they didn't tell me was that they also charged me another $50 to do the assessment. What a cheek!

I have also arranged to be wheelchaired through the airports. It seems that all airlines are quite happy to make these arrangement of you ask. Since the recent tragic attack at Brussels airport, I am guessing that the transit through airports is going to involve even more delays - so I think the wheelchairs will be a saviour.

I am also preparing myself to go "beep" as I go through the security alarms. I am guessing that my scar (which is healing well) will be a bit of a give away.

I have been really touched by how kind and helpful people have been making the travel arrangements for my trip; such as organising ground floor rooms and transfers from the airport etc. It has made the travel much less daunting.

I look forward to reporting on my knee related travel experiences next week.

Seven week progress report

18 March 2016: Seven weeks since the TKR

It is hard to believe that I have been on this recovery journey for 7 weeks. Sometimes it seems much longer.  It is a wet autumn day today and Lewis has been getting into the "orthopaedic surgery" groove today by demolishing the leg bone of an extinct brontosaurus.

Lewis munching on his bone and being stalked by Abby

It is two weeks since the last blog update and I have had a few ups and downs. I last reported that I was feeling pretty pleased with myself after a couple of walks - but in the following days I was really really tired so had a few days with my knees up. I kept up with my pool exercises and my flexibility and balance is improving.

Creepy gap in scar

In the last blog I included x-rays of the implant and was wondering what was going on underneath the skin. Last week I had the weird sensation of scratching what I thought was a small piece of dried skin on the scar - only to find that it was in fact part of a 1 cm suture which I was able to pull out of the scar. The next day a couple of weird little blue-black blood blisters bubbled through the scar and then some blood oozed out. It didn't gush out but the scar started to open up. I wasn't really sure about whether this was normal. So I popped along to local physiotherapist to get a more informed opinion (Yes - I admit it - I googled "blood blisters on scars" and was rather alarmed by someone who said that hers turned out to be the beginning of an MRSA infection). So the physio and I decided that it probably wasn't infected - it was just a bit of trapped blood that was rising to the surface. But it put a stop to my swimming in the pool for about a week.


I also ventured out into the real world - the local DHB held an evening meeting of local health services and I went along to represent the Takapau Health Service (I am one of the Trustees). It was all rather daunting walking with crutches in to a meeting room with about 60 people all standing around talking and having snacks and cups of tea. It rather freaked me out as I realised pretty quickly that I wasn't yet up to social chit chat and standing around - so I quickly went and sat down at my table and spoke to my colleagues who came to say Hi. At one point during the evening when we were reporting back on our table discussions, I was asked to stand up and speak. However I just wasn't up to it and so had to say - "sorry - ask someone else - I can't stand up and speak".  It is interesting how intimidating small, seemingly inconsequential or easy things can strike the fear of god into you...So still some progress to be made there...

We went down to Wellington last weekend as I had an appointment with the surgeon on Monday the 14th. During the weekend I even took Lewis for a walk by myself. That turned out to be pretty exhausting as Lewis was intent on racing around much faster than I could walk - but luckily he came back when I hollered and whistled. It took me about 45 minutes to go 1.5km. I estimate that Lewis ran at least 5-10km. I was pretty stonkered after the walk!

Over the weekend, it was very nice to catch up with my mother and friends Colin and Ruth, and Marama and Gavin over the weekend. It was great to hear Marama observe how differently I now walk (no more lumbering from side to side).

Knee is coming along well -
you can still see the lumpy haematomas

On Monday,  the specialist was very enthusiastic about my progress. He said:

• my right knee is coming along beautifully 
• I now have a range of motion from 2-125 degrees. 
• he was pretty relaxed about the oozy blood and just said it was related to the stitches below the skin dissolving. 
• that I should stop taking  tramadol (a pain relief medication) as it was probably what was making my brain so fuzzy and making it hard to concentrate. He recommended that I should try a new anti-inflammatory medication - Arcoxia and gave me a script for that.

He was very confident I would progress well over the coming months and that I would be fit to travel to England to speak at a conference in June. 

It was nice to hear that he was pleased with progress as I had been feeling pretty tired and deflated at how hard short walks seem to be. 

The next morning I received an email inviting me to join the international steering group of Cochrane. For those of you who don't know about Cochrane - it is the most amazing group of medical researchers located around the world who go through massive libraries of health research to identify the best health evidence to help clinicians, consumer and policymakers make informed choices about treatment. There are more than 30,000 people involved in Cochrane and I have always been hugely impressed by the Cochrane people I have worked with and the way the collaboration is organised - so I was delighted to be invited to join their Steering Group. 

As part of joining the Steering Group, I need to travel to London in a few week's time to attend their Board meeting in early April. While I really want to travel, it has been interesting to have to rethink what it means to travel so recently after surgery and when I am still not sure-footed. So...

• I checked with the surgeon that I would be fit to fly - and he said YES! So that also means I will be able to get travel insurance cover
• I found out that I can arrange a wheel chair assistance service to wheel me through Immigration and Customs - so that I don't have to try and stand for long periods of time
• I was told to wear graduated compression hose on the flight. However as my leg is still swollen (51cm around the calf) and hardly any compression socks will fit fit me. But after lots of internet searching I located a very nice person who couriered 6 sample socks for me to try out - and just like Cinderella - one fitted.

The other nice thing about this trip is that I will be travelling along with Cindy Farquhar and other people that I know, so I am hoping that will make it all a little less daunting and more enjoyable.

With the trip in mind (and the leaky scar)- I have been back to the gym for the last few days. I managed 500m on the treadmill (13 minutes) and 1 km of the exercycle (5 minutes). It was lovely cycling on the exercycle - it felt so fast and free...so I will be working on that some more in the weeks to come.

I hadn't expected to be travelling so soon after the operation and it is a little daunting. I am really clear that getting back my fitness and walking ability is my number one priority this year - so I am seeing this as an opportunity to look at doing things in a slightly different way to how I have traveled before. So - no more heavy bags, a very pared down wardrobe and a walking stick... although maybe a broomstick would be more fun :-)

One other interesting thing to report. On my way home from Wellington I stopped at a pharmacy to get my new script filled. I was rather surprised when the pharmacist came over and said they couldn't fill the script as they didn't have any Arcoxia available but they could order it in. She also said - did I realise that Arcoxia wasn't funded and that it would cost around $120 per month.  I was rather surprised about it and decided to wait til I got home when I could talk to my local pharmacist.  I did some preliminary searching about Arcoxia. I went first to the Medsafe site and saw that it listed quite a few concerns about Arcoxia - a COX-2 inhibitor. The medicines risks were all pretty smoothed over on the sponsored website so I decided to phone up my pharmacist and have a conversation about whether it would interact with my existing blood pressure medications. She advised me to go and look at another part of the Medsafe website that contained warnings from 2005. I recalled the concerns about celebrex but Arcoxia wasn't on my radar. The pharmacist went through my current meds list and said that she wouldn't recommend it and that I should discuss the prescription with my GP.

I am now using this great app - Manage My Health - which allows me to email my GP with questions. So I flicked her an email and she replied that she didn't think I needed Arcoxia and that I should go back to using the anti-inflammatories (naproxen) I had been using before the surgery. 

The Naproxen isn't without its own risks, but I know it works for me and it helps me to manage the discomfort as I get more active. It isn't addictive like the tramadol.  

It is a minefield out there and it amazes me how much time is taken up trying to get the right health information. I really worry for people who don't have the time or the knowledge of where to go to get information they need to manage their health.